When faced with going on dialysis in the spring of 2006, I was given two options: in-center hemodialysis three times weekly for long periods of time, or daily PD (peritoneal dialysis) which I could do at home, several times a day. And no needles. I hated needles. In the beginning, PD was the easy choice for me.
I’m a big guy with a physique more like a lumberjack, so my doctor recommended a few extra exchanges to make up for my size. While PD works for many people, the therapy did not bode well with my schedule. I was (and currently am) a full-time teacher with a part-time gig as a ghost tour guide in Savannah, Ga., where I live. On top of that, I was in graduate school getting my masters online in Special Education. Just coming off of a divorce, when I wasn’t working or studying I’d want to head downtown to keep my social life alive. There was not much extra time for dialysis treatment.
After trying out a few dialysis clinics in Savannah for my treatment, I finally ended up at a new center in 2008. Whenever I discussed my lifestyle and treatment with my nephrologist, he would urge me to seriously consider home nocturnal hemodialysis. He explained the benefits of being treated overnight, and how helpful it could be for my busy schedule.
But I couldn’t get past self-cannulation and my fear of needles.
Who wants to be different?
I didn’t want to accept that living with dialysis meant I needed to live differently than the average guy. I would tell myself I was fine, that I was not sick. But, what I really needed to do was take time to make my treatment a priority.
By 2010, PD was no longer an effective treatment for me. I could barely make it through my 40-hour work week at school. Eventually, I had to give up my passion of tour guiding, and if I wasn’t at work or completing coursework online for my masters, I was alone watching reruns of Scrubs, a TV show.
I looked horrible. I shuffled when I walked. My phosphorous level was through the roof. Every meal made me nauseous and sick, and I lost over 60 pounds.
I no longer felt like the Robby I used to be, and I hid my kidney disease from the world. I started giving up on living my life the way I wanted to live it. Thankfully, the doctors and nurses at my center never gave up on me.
After many discussions, I made the switch over to home hemodialysis. In the fall of 2010, I had the surgery for my fistula and began the Center’s training program to perform hemodialysis at home.
With the help of my team at the dialysis center, I found the training program for nocturnal dialysis at home to be comprehensive and easy to follow. My fear of needles was tough, but they guided me through it. After completing training, I started home treatments on a small portable hemodialysis machine, the NxStage System One. After two weeks of performing more frequent home hemodialysis therapy, I started to feel better both physically and emotionally. I was finally accepting the Robby I not only wanted to be, but the Robby that I needed to be.
Getting Robby back
I eventually found that frequent home nocturnal hemodialysis (6x a week for me) fit better into my busy schedule because I was being treated while I was sleeping, in my own bed. The shuffling went away and that ol’ Robby strut I was always teased about slowly came back. I had more energy to get back out into the world and start living again. I started dating and even ended up meeting the love of my life.
It’s hard to describe dialysis unless you’ve gone through it, but this is the best analogy I’ve ever heard. For me it’s like a three way light. The lowest setting, where it’s dim, is what PD felt like. For me, the middle setting is just like home hemodialysis; it’s bright but I could tell it could be even better. My home nocturnal hemodialysis therapy is like the highest setting for me; I can see everything clearly and I feel great.
I completed my master’s degree, I still teach Special Education in high school, and just over a year ago started tour guiding again, building up my own company. I married the best wife I could ever ask for who has blessed me with two wonderful stepchildren. And we laugh. A lot. Almost as much as we love.
I don’t hide my treatments from the world anymore. While I don’t feel a need to broadcast my condition, I do not feel any shame about who I am now. I no longer feel alone.
Everyone in my family knows that at about seven o’clock each night I go into my room and begin setting up to perform my home nocturnal therapy. About the time my cycler is primed and my needles are in, my son, Jude, has had his shower and he joins me as we watch reruns of The Big Bang Theory together. It’s our routine. It’s my lifestyle now.
Oh, I still hate needles. But I love feeling good, so it’s more than a fair trade off.